What is the real problem with trialling NDT is ... - Thyroid UK

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What is the real problem with trialling NDT is it doctors don't know how to dose properly,cost or both?

VanessaB profile image
17 Replies

Just wondering what the blimin' problem is in trying something new.My doctor freely admitted she didn't know how to dose but then there is the cost as well ,I for one would be willing to pay for it I pay an astronomical amount in supplements etc

If you have say epilepsy or rheumatism they just say oh well that's not working lets try something different.My son went brought 4 lots of cream for excema If they worked on the same premise for him the poor little mite would still be itching.

If I was not getting better on it at least I would have tried it's not getting the chance to try something different that is so frustrating.

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VanessaB
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17 Replies
Moggie profile image
Moggie

My endo nearly hit the roof last week when I mentioned NDT (I only asked him what his thoughts were on it) and he then went into a full rant of "you have just mentioned fillers in T4 that could be causing you a problem but then ask about NDT. This is one of the worst medications for exactly that - we just dont know what is in them and at what quantity". I let him have his little rant and then calmly stated "well I was only asking your opinion, I wouldn't take NDT as I'm a veggie and have been for years". Just to see the picture on his face was worth the rant.

So maybe that's just one of the reasons the NHS dont like giving it to thyroid patients as you know how they like to control.lol.

Moggie x

greygoose profile image
greygoose

Big Pharma.

If everyone took NDT Big Pharma would lose a fortune on their synthetic T4. It's in their interests that doctors do not know how to dose NDT or anything about it. They have given it a really bad press and these moronic doctors just take their word for it.

You really have no idea how Big Pharma controls your life!

Hugs Grey

RedApple profile image
RedAppleAdministrator in reply togreygoose

Sadly, this quote from a US pharmacist publication in January 2012 (so only one year ago!) helps to back up your Big Pharma suggestion Greygoose.

Desiccated (dried and powdered) animal thyroid (Armour® Thyroid), now mainly obtained from pigs, was the most common form of thyroid therapy before the individual active thyroid hormones were discovered. Desiccated thyroid contains T4 and T3; but the balance of T4 and T3 in nonhuman animals is not the same as that in humans. In addition, the amounts of T4 and T3 can vary in every batch of desiccated thyroid, making it more difficult to moderate blood levels. Finally, because desiccated thyroid pills have binders, they are not completely “natural.” There is no evidence that desiccated thyroid has any advantage over synthetic

T4—and may have notable disadvantages.

You can download and read the whole document here

uspharmacist.com/USPExams/1...

We are consistently being encouraged to seek advice from our 'oh so knowledgeable' pharmacists. Ok, so this is a US document, but why should we trust UK pharmacists any more?

shaws profile image
shawsAdministrator in reply toRedApple

I have been told by someone who lived in the USA that pharmaceutical companies give Representatives of their Companies and the doctors who order the goods, very nice inducements such as family holidays etc.

I have just seen this from Dr Lowe:

Based on these two beliefs, the doctors dogmatically pronounced that all hypothyroid patients should be treated with Synthroid. The doctors’ pronouncement was thoughtless parroting of a sound bite from the corporation’s marketing campaign—a campaign so effective that Synthroid eventually became the third most-prescribed drug in the U.S.

In my view, the doctors who parroted the Synthroid marketing hype should feel shame; they allowed themselves to be duped by a sales campaign for a product that was—and still is!—no more reliable than any other thyroid hormone product. In previous publications, I have cited the FDA evidence for Synthroid’s lack of reliability.

web.archive.org/web/2009020...

RedApple profile image
RedAppleAdministrator in reply toshaws

As I understand it, there's a lot of truth in this Shaws. Our UK doctors are less influenced by this sort of thing due to the way the NHS works.

Unfortunately though, the kind of 'untruth' that I've quoted above does greatly influence our UK medics, regardless of whether there's any personal incentive for them. :(

One so called 'endocrinologist' I saw actually used the words 'voodoo medicine' when he realised I was taking desiccated thyroid.

helvella profile image
helvellaAdministrator in reply toRedApple

Hey! That document is even more interesting in that direction, it also says this:

This activity is supported by an educational grant from Abbott Laboratories.

Faculty Disclosure:

All faculty and planners participating in continuing education activities sponsored by Continuing Education Alliance are expected to disclose to the audience any significant support or substantial relationship(s) with providers of commercial products and/or devices discussed in this activity and/or with any commercial supporters of the activity. In addition, all faculty are expected to openly disclose any off-label, experimental, or investigational use of drugs or devices discussed in this activity. The faculty and planning committee have been advised that this activity must be free from commercial bias, and based upon all the available scientifically rigorous data from research that conforms to accepted standards of experimental design, data collection, and analysis.

Dr Hulisz has nothing to disclose with regard to commercial interests.

The Planning Committee for this activity included Ruth Cohen and Margaret Inman of Continuing Education Alliance. The members of the Planning Committee have no significant relationships to disclose.

Disclaimer:

The opinions or views expressed in this CPE activity do not

necessarily reflect the opinions or recommendations of Continuing

Education Alliance, U.S. Pharmacist, or Abbott Laboratories.s

By an amazing coincidence Abbott at that time were in total control of the incredibly expensive, USA, branded Synthroid levothyroxine product.

(Some corporate restructuring seem to have hived at least some aspects of Synthroid off to Abbvie since then.)

It is interesting that Abbott wish to provide an educational grant for this form of educational activity. As Abbott must make decisions in the interests of their shareholders, and we certainly are not impugning any individuals, we are left to speculate on the benefit to those shareholders of this funding.

Rod

in reply toRedApple

So natural thyroid doesn't contain the correct ratio of T4 to T3... it's not the same as a human ratio.

But levothyroxine also doesn't contain the correct ratio... of T3 and T4.... (it contains no T3)

Surely humans fare as badly with no T3 as they do with too much........

What evidence is there that levothyroxine is going to be better than NT?

Will save you bother of a reply the answer is NONE!!!!!

RedApple profile image
RedAppleAdministrator in reply to

Here here!!!! or if you prefer... hear hear!!!

helvella profile image
helvellaAdministrator in reply to

Absolutely! :-)

However there is a technical point here that reflects back in what I think is a hilarious way.

The official monographs/standards for Levothyroxine tablets actual allows up to (typically) 1% of T3! It might be that this rarely happens, or only in some formulations, or whatever. But it is only allowed as an unavoidable consequence of manufacturing and storage. And yet, if you suggested 2 micrograms of T3 alongside your 200 micrograms of Levothyroxine, many of them would have a thousand fits.

My endi does not like ndt he told me not to take it :( but why) he really didn't like the stuff x

shaws profile image
shawsAdministrator

The doctors and endocrinologist have to follow guidelines and this is a quote from the British Thyroid Association:-

Armour thyroid extract

Armour thyroid extract is desiccated animal thyroid extract which was superseded by

synthetic thyroxine in the 1960s. It must be obtained from the USA. Although not

normally prescribed in the UK, because it is not licensed for use, it can be given

through the NHS if specific arrangements are made on a named patient basis.

According to the Medicine and Healthcare Products Regulatory Agency, it is the

decision of individual NHS Trusts as to whether an unlicensed product like Armour is

made available on a NHS or private prescription.

Armour thyroid extract is not recommended by endocrinologists as standard thyroid

hormone replacement treatment, as the amount of thyroid hormone is more variable

between batches than it is in thyroxine tablets. Furthermore, the ratio of T3 to T4 in

Armour thyroid extract tablets is higher than is normally secreted by human thyroid

tissue, resulting in potentially harmful levels of T3 (one grain, about 60 mg, of

desiccated thyroid extract contains about 38mcg of T4 and 9mcg of T3). The

position of the BTA is set out in a statement (british-thyroidassociation..... Although some patients wish to take Armour, for

instance, because they perceive it to be ‘natural’ rather than ‘synthetic’, there have

been no scientific studies that compare it to thyroxine, and there is a theoretical

reason based on the ratio of T3 to T4 to believe it could have adverse effects.

*****

Despite Dr Lowe of Thyroidsience saying that their statements were false and this is what he wrote to them - they never acknowledged it, despite two or three reminders. Unfortunately for us Dr Lowe died in January last year.

thyroidscience.com/Criticis...

I, as one of the many on NDT refute their statement that we 'perceive' it to be 'natural'. All I know is that I am well, have energy, sleep well, no palpitations,not dragging myself around, no aches pains etc etc. after a disastrous time on levo.

NDT has been in used since 1891.

helvella profile image
helvellaAdministrator in reply toshaws

I find it quite amusing in its way that the BTA quote you use mentions "named patient basis".

The MHRA's official attitude to this terminology is this:

One of these exemptions, in regulation 167 to these regulations, is for the importation and supply of unlicensed relevant medicinal products for the special needs of individual patients, commonly, but incorrectly called 'named patients'.

mhra.gov.uk/Howweregulate/M...

That is, there is nothing actually officially called "named patient basis"!

Wouldn't you have expected the BTA to get that right - as they always are right about everything?:-)

Rod

shaws profile image
shawsAdministrator in reply tohelvella

Yes - is that why Dr S is always "invited to visit the GMC". Why are GP's afraid of the 'named-patient basis'.

When I mentioned NDT to my doctor, he immediately reacted; 'it's £30 a prescription'. End of story. Outrageous, because under the latest 'reforms', doctors are now in charge of the NHS's finances! Thus, their function is no longer to cure but to be accountants!

parafluie profile image
parafluie

I'm coming to a pesky awareness: The health care system, medical associations-organizatins, doctors and Big Pharm really don't give a rat's a$$ about health OR patients, The sicker we are, the more money they get. The sicker we are, the more we have to go to doctors and they can prescribe non-workings to us to stay sick. The drug companies give grants to organizations, and pay marketing companies to write articles supporting their drugs so it looks like they are really effective. The doctors get more patients and more pay from NHS. The people suffer, but WTF. We are only monetary units.

akcoop profile image
akcoop in reply toparafluie

Certainly very much evidence points in that direction if you dig for answers to awkward questions.

It's not pesky, it's downright scary, and it's a criminal inversion of any public health remit.

parafluie profile image
parafluie

Yes, akcoop. I agree. It is scary and it is a "pesky awareness" only because I'm fully aware my helplessness to do anything about it. I find my ways to move around the systematic damage by doctors by avoiding most of them. I have to be quite up-to-date yet totally suspicious of most medical knowledge, and that makes me look very fringe. I was a pharmaceutical marketer and medical writer (AMWAY) and was far too privey to techniques.

Sadly, most people don't educate themselves and look to the con-artists to run their lives.

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